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Wednesday

Excitement! Thank you to Jodi from Sources!

If you are from BC Canada and need some help with your autistic or FAS child or young adult, contact Sources! (previously Gateway). What a wonderful program!

Jodi arrived with a binder filled with excellent information, from a list of all the books I am welcome to borrow from the Sources library (which I certainly will be doing), a comprehensive layout of the services her organization offers, to amazingly in depth set of paperwork to fill out (heeeee! More paperwork! sigh) that will help us to identify areas in which NSLM could use some intervention.  My not so long list is a bit longer now, but it now includes minor details such as "note to self: Find a science club, invention club or even a capable adult who will start one."
Jodi spent two hours here, will do the same with my ex-husband in his home, and then will be back every two weeks for a few months (at least). She will take all our filled out forms and the data within, and then she will show me how to design an intervention plan for target areas.  More importantly, she will show me how to track the success (or not) of our intervention.  How exciting is that?
She is even going to help me educate the local RCMP a wee bit, by creating an information flier for them about my child.
So excited!

Monday

Meeting today!

So, today is the day a coworker worker from Sources is coming to teach me how to plan a behavior intervention and how to execute that plan for "Not So Little Man". I have, as she requested, created a list of short-term and long-term behaviors that I would like to focus on. It's not a very long list.

Holding this one sheet of paper, and it's meager contents, I cannot help but compare this list to the list I had when "Not So Little Man" was five years old. It's interesting,that now, when is in his teens, that there are less behaviors to worry about, yet in my mind they are more worrisome.

People expect great things from him. They're angry when he does not make eye contact. His peers don't recognize or reason as to why he's ignoring their overtures. Teachers can assume that his echolia combined with his excessive use of sarcasm is akin to sassing. Because "Not So Little Man" has worked so hard, and received so many interventions, it is less obvious than "Not So Little Man" has a disability. So the very gains that we worked so hard to achieve, at this point and time, or biting us on our proverbial butts.

One of my best friends also has a child who is ASD, previously known as Asperger's. Recently we were talking about this upcoming visit with a worker from Sources. I was also talking about the buttons of fliers that I obtained to put on the board of the college for world autism awareness month. My friend, in the midst of this conversation, made a comment about how she does not advocate for her son at the same level that I advocate for mine. She also made mention that she was not up-to-date with the autism community, news about autism, visual training, new therapies, pseudo scientific therapies and so forth. I don't how other people feel, but it makes me very uncomfortable when other people talk as if what I'm doing is noteworthy. That being said, her words were startling. She's a very active parent. She is often at the school demanding better services and accommodations for her son, finding therapists, and a multitude of other things that parents do. Not ever have I looked at her outlook on autism and felt superior, or felt that she was lacking. I think that every parent has their own way to advocate for their children. I certainly hope that I have never given the impression that I feel other parents are not doing enough for their children.

Regardless, we were discussing my short list of behaviors and the more important topic of how people expect our sons will have all the skills and behaviors that a typical child their age has. I know every child of spectrum is different-I love that phrase, “if you've met one autistic person, then you've met one autistic person." Yet this is a complaint I've heard of, and read about quite often. Sometimes this is a matter of the people around your child ( my child), not having an understanding for what autism means for that child. I understand that learning what autism is is a continuous process. But as per school district protocol, all adults are required to receive autism specific training prior to being involved with any ASD student.

On the plus side, "Not So Little Man" has some wonderful people working with him this year. Although his EA is excellent, due to the social stigma associated with having an EA, "Not So Little Man" is working very hard towards more independence within the school. This is very exciting to me, as it is the time when "Not So Little Man" himself is learning to advocate for himself. He is starting to recognize strengths and weaknesses, which I think is of invaluable experience.

It is my hope that once Jody leaves today, I too will have an invaluable experience. It's great that there's always therapists about, able to direct, train, and intervene with my son, but I need the tools with which to teach "Not So Little Man" himself to direct, train, and intervene with his own behaviors. Anyways this was not supposed be a rant, I just wanted to share my excitement with the upcoming meeting. I will check back in later.

*Dictated with Dragon. 

Thursday

All those expensive therapies...

I have been grumping for many years about all the online complaining from parents of children with autism: "Poor ME! Ruined my life! It's So HARD! It costs so much money! I ended up divorced!" It goes on and on and rarely fails to startle me-because while I get it, I just. Don't. Get. It.

That being said, I came to a few conclusions after reading a few of the blogs, newspaper posts and comments to both this month (Being that it is Autism Awareness Month there are a great deal more posts that are easily found).

Here's my take on the differences:

Many parents are horrified by the costs that come with autism. 
These costs have not effected me, because NSLM's assessments were by the school and later referrals from the professionals working for him so I paid nothing. . All 'mainstream' therapies (speech therapy, Behaviour Analyst, Behaviour Interventionist, Play Therapist, Educational Assistant) and tools (Books on teaching Social Skills, books on autism, videos on autism and social skills, cowriter, dragon dictate, comic lite, laptop etc) and training (conferences, classes etc for myself and any other adult working with NSLM) is covered by his funding (both his Ministry funding and by his School District funding.) 
Welcome to Canada! HOWEVER, woo and pseudo science is not covered.. (naturpathic, lupron, chelation, hbot, gfcf, homeopathic FC etc.) I did pay for one year of speech therapy myself, before we got NSLM's diagnosis straightened out.
So I guess for parents finding themselves having to pay out of pocket, particularly if they are paying the outrages prices for 'alternative' measures, it would be horrific.

Many of the parents posting talk about all the time needed to run their children to all these appointments, the cost of those appointments, resulting missed work and travel costing hundreds of thousands of dollars. 

Prior to school, I am the one that taught NSLM all his social cues, made visuals etc.  I read books, scoured online (recommended websites as per the autism team) and did what I was taught and did what worked. 

When NSLM started school, all those therapists came to him at school.  I was also blessed in that my then husband was able to support our family while I attended school with NSLM (K-4). We didn't have much ( I still don't have much, lol), but we had a roof, food and clothing so it was all good.

I read parents complaining that they 'gave up their lives' for their autistic child.  I gave up a great deal of freedom that childless adults have so that I could have the joy of being a mother.  I made that choice.  I was never angry to be a stay at home mom. I was thrilled! I might have been easier to not do all the hard parts, but I am grateful that I was able to be at home for all the good parts, and to do all the teaching.

I imagine, if I lived somewhere where all these therapies came out of my pocket I might be a little (lot) cranky.  But...Well... I still can't but help but think about what I would do if my NT child was...say... a somewhat gifted (or interested even) singer...OH WAIT!! She is, and I drive her all over, I pay HUGE amounts of money for lessons, equipment and MEGA personal sacrifice to support her talent-because I thought that was part of what I signed up for when I chose to be a parent. When NSLM decided he wanted to learn drums, I found a way! He is now the owner of a fine set of drums with weekly lessons. When my oldest wanted to play hockey, I cringed... but we would have figured it out... because that is just a part of parenting.  Finding a way.

So I get it, sorta.  Many of the parents that are complaining are from countries where therapists are not covered.  I get that, truly I do.  I can't imagine the struggle to pay the $150 hour for each of those therapists, at 2-6ish hours per week needed. I would have had to learn to be NSLM's speech therapist too, I guess.  Having seen how dramatics varied the options are from country to country I am wishing we could divert all that funding that goes to the autism/vaccine research into funding for therapies....

Tuesday

NSLM and the suprising artistic talent

This will have to be a quick post, because I need to study for my exam tomorrow...But today, when I went to the middle school, NSLM's teacher showed me this:

This is really impressive, as we had no idea he could draw like this! And interestingly enough, the puzzle piece is a coincedence and nothing to do with autism. :)

Worksafe investigation into Langley BC autistic student...wtf

There is a rather interesting article HERE concerning the autistic boy in Langley BC who was told he cannot attend school.
Turns out WORKSAFE BC was involved when a teacher made a complaint to them, alleging that there were 'over 16 physical altercations between students and teachers".  As alarming as that may sound, no one seems to be able to say if those altercations involve the boy in question or not and the school is not allowing the parents access to their child's school file.
WorkSafe BC is a wonderfully proactive but immersed in politics organization that provides safety guidelines for businesses and workers.  I understand that any business can be 'autidited' as well.  All well and good, but I am uncertain as to how they have the ability to deny a child schooling.
As someone who has spent many years volunteered in the school, I am also aware that there are many more altercations in elementary school than most parents realize.  Unless your child is involved, you are not likely to be informed.  (Although it sounds as if the parents of the Langley child were NOT informed of any physical altercations, which begs the question: Why were they not involved or informed?) Most of those altercations are with the typical student, not with a child with ASD.  Yet the article implies that the lack of training that the teachers receive on how to 'deal with' autistic children is why this particular child has been ousted.

As a parent of an ASD child who resides in BC I am startled that the teachers do not have any ASD training, as our teachers here do.  I am horrified by the idea of my son being involved in an altercation with a teacher and my not being informed.  The knowledge that a BC school is denying this child entry is terrifying. 

I really wonder what the outcome will be, how much what is being shared publicly is accurate and what is being left out.

Hugs and Laughter to my school for not doing this to me.....

Wednesday

That tired old debate-vaccination

I am so very tired of hearing about vaccination being evil.  I am tired of Jenny McCarthy, Wakefield, NVIC and AOA.
The idea that it is ok to choose not to vaccinate because of the minute risk of death/injury from that vaccine is simplistic at best.  At worst, parents who choose to not vaccinate their children on the basis that their child 'might be injured by the vaccine,' is a gross injustice to the babies that have died from pertussis, measles, ruebella (so forth and so on.)
I really understood the non vaccination stance, back when the news was bombarding us with scientific studies that say our babies are at risk from those vaccinations. 
But those days are past.
Now there are multitudes of respectable studies (studies that have been peer reviewed and duplicated by others) that demonstrate that vaccines do not cause SIDS, nor Autism, and that the risk of an 'adverse reaction' that requires medical intervention is rare.
Rare as in you are more likely to win the lottery twice in a row when you only bought two tickets in your whole life rare. Babies have died (and are dieing) because of these selfish parents that are determined that its a giant conspiracy! That the world's governments and the gross majority of health professionals worldwide are in cahoots with every scientist on the planet to hide from us that vaccines are deadly dangerous, causing every illness and disorder known to man.
To what purpose I ask? Once those vaccines have killed us all, who are they making money off of?  That one measles outbreak cost well over $120,000 just in hospital bills.  What does an epidemic cost? After paying off all the people that would have to be bribed to silence, (were this really a hush hush conspiracy) how much proffit would there be in vaccines?  Seriously people, time to engage the brain a wee bit.


Children that are not vaccinated are diagnosed with autism (like mine.) Children that aren't vaccinated die of SIDS, pertussis, HIV, measles and a multitude of illnesses and injuries.  Children that are not vaccinated have caused untold amount of illness and death by spreading highly contagious diseases to babies that are too young to be vaccinated.


This while thing has turned into a screaming match of parents hollering that THEY and their children ARE more valuable that a city full of babies.  That their RIGHTS supersede the rights of society.  That they have the right to put their child at risk AND to put my community at risk.


For shame.


I can just see this argument being used in other arenas.
Public transportation has been pointed at as a source for being robbed.  I mean, there is a youtube video and some porn model that say it's so.  So I can drive drunk, and choose to have my kids in the car, because that is my right.  Regardless of the danger to the rest of ya, you can't decide for me!!

Your kid allergic to peanuts? Deathly allergic as in my eating peanuts and breathing on him/her could cause immediate death?  He/she is too little to understand that gravity of the situation and how to take precautions? Well my right to eat peanuts and mash peanut butter into your child's desk is way more important than your child's life. 

What? It's not? Really? 

Well I'll be danged.  See, that is why we have rules and laws. The reason we allow these infringements on our rights to do whatever the eff we want, is so that the safety and well being of the majority is protected.
And I say that vaccinations are part of the safety and well being of the majority.

Tuesday

Autism Books

How many of the parents that I have 'met' or read online have books out on autism?

Monday

NSLM and the Autism Button

So, in preparedness for my own little autism awareness plan (I am in college, so I got a HUGE button that says, 1 <3 someone with Autism and Someone with Autism <3s me!, figuring it might open a conversation or two, and it certainly did.) I have it clipped to my shirt, with pride.
When NSLM came upstairs to have his breakfast he, of course, didn't look up.  He grabbed his cereal and his juice, and stumbled to the table.
He does not wake up gracefully, lol.
Halfway through his breakfast he glanced at me.
He stopped, staring, with his spoon suspended halfway to his mouth.
He seemed, for a moment, to be completely dumbfounded.
He did that tiny smirk that is all him, then continued to eat his cereal, smirking the whole time.
I pretended not to notice, as I have learned that patience can be very rewarding. :)  I was guessing that he was startled to see his words on my button.
Finally, he slides his eyes sideways to mine for a moment, then says, "What makes you think I love you?"
Then he laughs.  "Love you mom!" he sing songs.
Sigh.... I love my kids!

Sunday

The fear of autism

I have a story to share, that I am not sure anyone aside from my family knows the details of.

Back in the day (heee! I've waited years to say that!), in 1990, I WAS one of those parents who were scared to vaccinate.  I thought autism meant living in an institution, that vaccines, more so if given before the age of two, were dangerous-causing SIDS, autism, death, siezures etc.

I was pregnant with my oldest child when my mother started to take classes on herbology.  I was still young, 19, and living with her.

I did vaccinate my oldest, but not until he was 2.

Then, in 1997, when my daughter was born, I fought bitterly with my then husband, over vaccinations.  I had read this book my mother had given me, that detailed how in Japan vaccinations were not given until babies were over 2.  This book (no clue now which woo book) stated that Japan's SIDS rate dropped to nearly zero after choosing this over two schedule.  We went to talk to my mom's chiropractor, who assured us that there was little to no risk, providing I breast fed, if we chose not to vaccinate.

The next year, when my youngest was born, we still agreed to not vaccinate.  By then there were many other books and news stories out that detailed how the MMR vaccine may be linked to autism. 
When my youngest was less than a year old, I knew something was up.  As the oldest of four children, and with three of my own, I had enough experience to know the general behaviours associated with the various ages of development, and my precious baby was not meeting any of those milestones.

He walked, but he had no babble.  He rarely made noises, aside from crying. He pitched fits that we couldn't figure out the reason for. Fits that looked like siezures and went on for ridiculous amounts of time. He didn't seem to notice if I was in the room, never mind crying if I left.  He did not respond to his name. He didn't play with toys, really, but instead would wander around the house shutting things (doors, cabinets, curtains) and hanging the teatowel on its hanger.  If it wasn't for my daughter, Princess, he would have just happily wandered around closing cabinets or standing underneath the kitchen fan light. 

At the age of two it was obvious that things were becoming more noticable.  Feeling stupider than I have ever felt before or since, I arranged to have my children vaccinated.  I have, many times since, felt nearly sick over the 'what could have happened' train of thought-that goodness my children did not catch any diseases.  The cloak of guilt is heavy enough as it is-I am certain I NEVER would have forgiven myself had one of them become ill because of my fears.

Now, when NSLM first began to teach us what autism is, people in public areas would stare, tell me or him off, snub us, or act as if we were contagious.  The teachers seemed to be uncertain as to what, exactly, to do with him.

For the first four years of NSLM's schooling, I sat in class with him.  I had to-the teachers and 'aids' just wanted to argue with him or force him to participate, rather than to communicate his way or to learn WHY he was 'being difficult'.

It was a battle.

That is what I remember of dealing with people outside the home.

Now, I see my community responding. I see teachers with training.  I see people in public, when NSLM has an 'autistic' outward behaviour, will ASK and do so with RESPECT and interest, rather than with fear and judgement.

As a side note concerning vaccination.... I am currently in college and just wrote a paper on Jenny McCarthy and vaccination.  Vaccination rates have been climbing dramatically last year and more so this year.  HURRAH! if anyone wants the resources for that info, let me know.

Saturday

Autism-from my family to yours

Autism means something different to every individual on the spectrum, to every family of those individuals and to each support worker.  I love the autism catchphrase, "If you've met one autistic persons, you've met one autistic person." I think we all need to remember this, not just for autism but for all those lovely "box words" that we use to classify people, because assumptions can be painful.
So, that being said, the following is from my family, about my family-not an outline of what every family that includes an autistic person is like.  So here are bits and pieces of conversations we have had about autism:

Me: "So, what do you think is different for us, than for people without an autistic in the family?"
Husband, "Instead of hockey tournaments to drive to, we drive to speech, conferences about 'stuff'.| (Looks at NSLM), "I am glad to, because I hate hockey."
Princess "We have to have a poster in the shower"
NSLM "We say the word autism. HAHAHA.  Yes, Mother.  I am not sure what other families do for a life.  Perhaps my joke is a joke that is not a joke."
Husband, "We eat dinner at the same time every day."
Me "Other families do that, I think, some anyways."
Hubby, "Ok, I didn't. Haha. Umm, signs to turn off lights, wash hands and so forth."
Me "HAHA! Wow, that just doesn't seem like a huge difference."

Me: "Ok, um, what do you find the most difficult part of interacting with NSLM is?"
(Silence)
Me "I find it hard to remember that half the time that you, (looking at NSLM), are sounding insolent that it is not intentional."
Princess, "Well, I don't like it, NSLM, when you don't pay attention to how you are dressed.  People might think you are stinky if your hair looks greasy."
NSLM, "My hair is clean."
Princess "Ok, but you didn't brush it, so its all, bleh.  And people that don't know you see that, and they like don't know you, so they kinda decide what you are like by how you look."
NSLM "That is not smart. But ok."
Princess "I just don't want you do get picked on."
NSLM "I don't want me to get picked on either! So brushing my hair will help this?"
Princess "Yes! It will."
NSLM "Ok"
(I will be watching to see if he will have more care with his hair now, this is a battle we have been having for some time-he hates to brush is hair, *sigh* teens....)

Hubby, "HA! He uses your words against you! If you say something to him, those exact words will be said later."
Me "And NSLM? Do you find it easier to talk to your friends in group than to us?"
NSLM "That answer would change."
Me "Can you tell us about that?"
NSLM "I have the less bit of work to talk to group.  No person does tell me to 'Look! Face Me!' I can talk to a person behind me and it is ok.  I can talk more here where it is that no one will bully (smirk), except Princess haha."

Me "Ok.  Can anyone think of anything that came with the autism diagnosis that is interesting?"
Princess, "haha! Well, that sense of humour is certainly interesting. (grins)."
Me, "I find your (looking at NSLM) ability to visualize things fascinating.  And then you build these amazing things! Wow! But, then, I do not know how much of that is part of autism, and truly (laughs) I don't care."

I will add what NSLM has to say about what he thinks about having autism, when he is ready to share. 
So, anyways, I hope that this little conversation was as boring for you all as it was for me. :)

I am not trying to belittle the struggle that some have, or most have at certain times, with autism-but regardless of where your (or your loved one) is on the spectrum, there is so much that is fairly standard.  We all sleep, eat and interact.  With each child a parent has to teach in a manner that the child can learn, foster talents and help overcome weaknesses.  With autism that means specialized people are available to help overcome those weaknesses.

Anyways, happy autism awareness day! 

Friday

Hugging-it's the new stim!

         NotSoLittleMan has grown and changed so much over the years that it sometimes startles me.  I look at him now, chortling over some witty comment he made and I remember the days when he was unintentionally hilarious. Now, with the help of interventions (social group, behavior interventionists, social comics, social stories, practice, conversations and videos); experience (playdates, mingling with peers in school, sports, activities); and growth (several years have gone by, he has, of course, grown and developed); my NSLM is no longer the brutally blunt (funny), friendless, constantly stimming, socially inept, train obsessed kid he was in kindergarten (and grade one, and grade two and...) 
        NSLM is able to greet someone, ask how their day was, wait for an answer and respond appropriately.  NSLM has made some new friends in middle school and has graduated from trains to YuGiOh  to video games and internet-with the more recent obsessions being much more age appropriate even if they would be considered excessive in comparison to his peers.
        NSLM has dealt with a bully successfully (albeit painfully), navigated a new and much larger school, learned to be somewhat flexible in his routines and can even cook a few simple meals. 
         And the old stim, particularly the circle pacing, has been replaced with hugging.  It is a side hug, or behind hug, and I am usually the recipient, but I do notice that in the situations where he usually needs to pace that circle he is now hugging me instead.
         I, of course, am loving it! But it leaves me wondering..... What is he doing at school? Cuz you can bet your favorite T Shirt that if he was randomly hugging people at school I would have heard about it!

    All joking aside, I am, like every other parent out there, enjoying the growth, worrying about the hurdles and doing what I can to encourage him to be the best dude he can be.  I thoroughly enjoy his more mature wit, ability to have a tongue in cheek answer for everything (although sometimes I struggle when he borders on insolent), He is an amazing kid!
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